Being sick makes him normal!!

Ok so I know that the word NORMAL is anything but the correct way to refer to a child but, geez I am so mind blown by his behavior when sick!  He acts just like a typical 2 year old.  He is of course whiny because he doesn't feel well BUT, and its a HUGE BUT...He gives me Love and is happy?  I have been told by his therapist that it can go either way.  Some kids with autism are more symptomatic while sick and others (like Jojo) are less symptomatic.  I hate having a sick lil guy but I love the glimpse into the way he really is.  I really think that when he is sick his body is so busy trying to fight off the illness that it cant stim or he doesn't have the extra energy to do the autism-like behaviors?  Here is the best moment thus far, I caught it in a picture too:

IPAD PECS System

During our last speech session our therapist seemed really positive about us trying out a pecs on the IPAD.  I had been a little reluctant because I was afraid he could become dependent on it for future communication.  But, in all honesty, our biggest struggle right now is the lack of both verbal and non-verbal communication so I am desperate to find some even ground

.The Picture Exchange Communication System (PECS) is an intervention program that helps people with developmental disabilities to communicate more effectively. The augmentative intervention is simple, and it uses inexpensive materials, in our case we will use the IPAD as a tool to deliver the picture system.  Jojo loves the ipad and is using his index finger, more and more. So I am hopeful that he will take to this pretty quickly.  Our homework this week is to take pictures of EVERYTHING around the house and out in the town too.  
The picture communication system, is alot like applied behavioral analysis (ABA), it breaks things down into small steps. Each phase of the system serves as a foundation for the next, and some kids may take longer in certain areas than in others, depending on their level of functioning. The systematic approach has six phases, and images are key in nearly every step.

Phase One

The first phase teaches children basic give-and-take exchanges inherit in language. It uses single pictures of desired activities and objects or foods. The child makes a connection between pointing at the picture and receiving the reward.

Phase Two

The second phase increases demands by putting more distance between the child and the picture. Instructors use the images in different areas, and different people may encourage the child to use use pictures to communicate wants and needs. This phase helps the child generalize the skill.

PECS for children with autism is an evidence-based approach that is effective in teaching children functional communication. Not only do kids learn the fundamentals of communication, they also learn that words relate to objects and activities. Over time, they may learn how to understand and express abstract concepts like feelings and wants.

This is a cute pic of Jojo during his DSI therapy working on sensory and pincer grasp using beans and pom poms.  The goal is to eventually have him scoop the beans into the bowl by himself.  Right now we do alot of hand over hand.

The horrible reality of ASD and extended family

I remember when the first feelings came that something was wrong. I felt alarmed and my instinct was to call my mom. She is a great listener and I knew I could vent about all I had been noticing. She did just that, listened and then kinda shuffled me to a new subject. I hung up and felt like, hmm that was weird.

A few weeks later came the comments from a few close family members and friends/acquaintances:

"He is fine"
"There is nothing wrong with him"
"All your kids have allergies"
"He will grow out of it"
"You bought him too many toys too soon he is overwhelmed"
"You keep your home too damn clean"
"Stop worrying about it and bake a cake"
"He just needs to eat more"
"You read to much and I think you make him do that weird stuff"
"don't label him autistic it could ruin his future"
"He needs to go to church"
"He is just lazy"
"he is spoiled"

I could seriously go on and on. These were all said to me at one point or another and by people who are close to me. Some are probably going to read this. I think it's just a way for people to try and make you feel better. You know trying to sympathize when in reality they have absolutely no idea what life is like with an autistic toddler. I sometimes wish they could spend a day just shadowing what goes on. Just see what it's really like.

For me personally, the hardest part was feeling like loved ones did not believe me. I felt like I had to scream to the world, "hey listen here:  my kid is autistic and I'm not making this shit up!" I did eventually do this with my immediate family but some of my extended family has chosen to just stay away. That's fine and trust me my mama bear instincts prefer it nowadays. I'm not gonna lie and say it doesn't bother me because how could it not?

The way I see it is this, with autism and its broad spectrum you have two choices:
A. Do nothing and pretend it will get better.
B. Do everything you can, use all local resources and get the best therapy you can, no matter what anyone thinks or says. And it can't hurt right?

I chose B, I'd rather do "A" but I figured that I could do a two year plan for my family. We give it our all for two years of ABA intensive behavior therapy to in turn, give our son the best possible future. And in the meantime not worry about the naysayers! Yup, I am very offended by all of the above mentioned comments and frankly, I'm sick of the "try this and that" if there was one simple fix I wouldn't be up at midnight writing this!

To the other moms going through this, follow those mommy instincts and do what's best for your family. Research what's available. Discuss it with your whole family(we talked with all the kids when we decided) then hold your head high about YOUR decision. You are amazing and that's why you were chosen to be the mother of such an amazing and unique child!

If you are a friend or family member watching from afar. Educate yourself and watch your words. A mothers heart is fragile during times of diagnosing a child with a disability.

I found some great resources on the autism speaks site. It's my favorite go to for info on all things autism!!
www.autismspeaks.org

Autism does speak, for real!!

Today I had the most amazing experience. It all started last night. I had a "jojo needs to find his niche" night and I started think about something to get him to try, again! He doesn't show interest in anything but wheels. He loves to touch my tires on the cars and loves to be eye level with the tires on our Tahoe. So I of course bought every wheeled toy I could find. Dad even wants to mount a steering wheel on my wall. So I thought about a train set my older son had called GeoTrax. It was super cool and very durable, could most definitely withstand the fits of a toddler! So I rummaged though our old toy storage and came across a few pieces of Trax and one train.

This wasn't enough to really do much with so I googled and found out they are discontinued as of 2010, Nooooo! This was just more motivating for me and I turned to online swaps and Craigslist. I found a few but they were pricey because of the status of discontinued. I replied to a few ads letting them know my situation and I had one sweet reply this morning. "We have a special spot for autism in our hearts, we would love to sell you our set at half off" I thought, score!!! Went about my day and convinced my hubby that this would be it, jojos niche I just know it! He just went along with my decision and I left just before dinner to get my hands on those GeoTrax, I just had to have them!!
>>>>>>>Grab your Kleenex<<<<<<<<
I pulled up and immediately noticed a cool zip-line going from the two huge trees out front of this gorgeous home. I was greeted by a nice man with a firm handshake. He showed me the trains and I could feel his sadness. He started talking about how much fun his son had with the set and that it was the perfect niche for him. His son had autism. He then blurted out that his son was tragically killed in a car related accident. He and his sweet wife shared a heart warming story with me and reassured me that their beautiful boy Quinn would be very pleased to have his set go to another boy dealing with autism and that by them sharing it helped them too. I was so overwhelmed with emotion. I politely accepted the trains and after exchanging info to keep in touch I hugged them both tight. I could feel the gratitude they felt in helping my boy and I hope they could feel the appreciation and love I felt in that moment.

I learned a lot because of this experience. The sweet blessings of life are sometimes disguised in such away that you really have to take a minute and let gods loving way show you the good. Sometimes a blessing is both ways. Yes I was blessed by getting a great tool/toy for my son to try out at a great price. But the kind family also was blessed, they received a blessing of comfort. Comfort in knowing their precious boys prized collection is in good hands and will live on in great memories to be made. Fun times will be made and jojos beautiful laugh will be heard at the same time Quinn's voice will be heard in my home as well.

*This post is dedicated to the Levi Family in sweet memory of their boy Quinn, may he continue to rest in love and fulfill his hearts desire through his families foundation. Quinn's treasures will be up soon, I can't wait to
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